The Ethical Debate Over a Dying Child

AUSTIN, Texas (CNN) -- When Emilio Gonzales lies in his mother's arms, sometimes he'll make a facial expression that his mother says is a smile.

But the nurse who's standing right next to her thinks he's grimacing in pain.

Which one it is -- an expression of happiness or of suffering -- is a crucial point in an ethical debate that has pitted the mother of a dying child against a children's hospital, and medical ethicists against each other.

Emilio is 17 months old and has a rare genetic disorder that's ravaging his central nervous system. He cannot see, speak, or eat. A ventilator breathes for him in the Pediatric Intensive Care Unit at Austin Children's Hospital, where he's been since December. Without the ventilator, Emilio would die within hours.

The hospital contends that keeping Emilio alive on a ventilator is painful for the toddler and useless against his illness -- Leigh's disease, a rare degenerative disorder that has no cure.

Under Texas law, Children's has the right to withdraw life support if medical experts deem it medically inappropriate.

Emilio's mother, Catarina Gonzales, on the other hand, is fighting to keep her son on the ventilator, allowing him to die "naturally, the way God intended."

The two sides have been in and out of courts, with the next hearing scheduled for May 8.

The case, and the Texas law, have divided medical ethicists. Art Caplan, an ethicist at the University of Pennsylvania, supports the Texas law giving the hospital the right to make life or death decisions even if the family disagrees. "There are occasions when family members just don't get it right," he said. "No parent should have the right to cause suffering to a kid in a futile situation."

But Dr. Lainie Ross, a pediatrician and medical ethicist at the University of Chicago, says she thinks Emilio's mother, not the doctors, should be able to decide whether Emilio's life is worth living. "Who am I to judge what's a good quality of life?" she said. "If this were my kid, I'd have pulled the ventilator months ago, but this isn't my kid."

The law, signed in 1999 by then-Gov. George W. Bush, gives Texas hospitals the authority to stop treatment if doctors say the treatment is "inappropriate" -- even if the family wants the medical care to continue. The statute was inspired by a growing debate in medical and legal communities over when to declare medical treatment futile.

Dr. Ross says that under the law, some dozen times hospitals have pulled the plug against the family's wishes. She says more often than not, the law is used against poor families. "The law is going to be used more commonly against poor, vulnerable populations. If this family could pay for a nurse to take care of the boy at home, we wouldn't be having this conversation," she said.

Emilio is on Medicaid, which usually doesn't pay for all hospital charges. The hospital's spokesman said that he doesn't know how much it's costing the hospital to keep Emilio alive, but that cost was not a consideration in the hospital's decision.

"[Our medical treatments] are inflicting suffering," said Michael Regier, senior vice president for legal affairs and general counsel for the Seton Family of Hospitals, of which Austin Children's is a member. "We are inflicting harm on this child. And it's harm that is without a corresponding medical benefit."

"It's one thing to harm a child and know this is something I can cure," he added. "But that's not the case here." Regier says Emilio is unaware of his surroundings, and grimaces in pain. He said the ventilator tube down his throat is painful, as is a therapy in which hospital staff beat on his chest to loosen thick secretions.

But Gonzales says her son is on heavy doses of morphine and not in pain. She said her son does react to her. "I put my finger in his hand, and I'm talking to him, and he'll squeeze it," she says. "Then he'll open his eyes and look at me."

Gonzales said she'll continue to fight for treatment for her son. "I love my kid so much, I have to fight for him," she said. "That's your job -- you fight for your son or your daughter. You don't let nobody push you around or make decisions for you."

My immediate reaction is that while I want people to be able to make their own decisions, this mother is evil.

She is needlessly keeping this child alive for her own personal enjoyment. Not that she enjoys seeing the child in pain, just that she wants to keep the child alive because to do it. And her argument of wanting to let the child die naturally like god intended obviously should not involve a device that breathes for the child.

I've been trying to avaid the "serious" threads lately, due to stress, but I have to way in on this one. I almost lost my first wife and daughter. I'll try keep this short (din' think I can though), but Cynthia had a trouble plagued pregnancy. She spend the last 3 weeks of her pregnancy in intensive care and Lexxy was delivered by emergency c-section, 3 months premature. I got a call from the hospital at 1:00am stating that I had to decide whether to risk my wifes life, and not deliver the baby early, or risk my daughters life by delivering her that early. I had already been thinking about how to answer that question. I told the doctor to prep my wife for surgery and that I was on my way. My daughter was less than 2 lbs at birth and her lungs were not quite fully developed. My wife stabilized and came home after another week, my daughter was in nenatal intensive care for almost three months. We tols th doctors to do what they could to help our daughter, but, not to leave her on a respirator if there was no hope of her breathing on her own. Luckily God was smiling on me, both my wife and daughter survived to be healthy.

If this child has no chance of surviving off of a respirator, he should be taken off it, an dlet nature take its course. I know how this mother feels. It's a VERY hard decision to make, but it has to be done. If the child has a chance of survival take it, if not.......... let him die in peace.

This is exactly what we told my brothers doctors last fall. We told them that if he had a chance of survival to keep the respirator on, but if they felt that the situation was hopeless, to let us know, and we would have life support stopped.

My family feels blessed to have my now 11yr old daughter healthy and my brither as healthy as can be expexted with only 1 lung. Decisions like this are EXREEMELY hard to make, but must be made. I wish that family all the best and good luck.

being in veterinary medicine I see animals humanely euthanized everyday and I wish humans had that option... of course we still have owners that will keep even their dogs on ventilators for weeks but it breaks my heart...

If I am ever on a ventilator with no hope someone should euthanize me... It is the humane thing to do.

I've faced situations similar to the one quoted in the article and to that described by Adam5.

$0.02 - I thought I was prepared for the decision(s), and in a sense, I was, in that I was able to take action consistent with my feelings and consistent with really caring for and loving someone. What I was unprepared for, in each case, was the aftermath, and frankly, emotional wreckage, that I experienced, and that's really the point of this post.

Certainly, many, if not everyone, on the board, would do "the right thing." It really surprised me though, that in the midst of grieving, I was also overwhelmed by a sense of responsibility, the feeling that I had caused or allowed someone I loved, to die.

When i read something like the article that was posted, I can't help but wonder whether there's some subliminal sense of foreboding, some subliminal self-preservation, that keeps everyone around the event in emotional pain, but prevents, or at least postpones, a different and deeper pain that frankly, does not seem to be equally shared.

Sorry if this is convoluted, but like Adam5, the emotions surrounding my experienced are still very raw, many, many years later. Knowing what i know, i can understand how a person might do what the mother in the article is doing, letting "nature" do what she hasn't the strength to do herself.

If I were that kid, then I would want to die NATURALLY without the ventilator... probably 99% of others would too... So, doesn't it make sense to assume this kid wouldn't want to live like this for a prolonged amount of time when all is completely hopeless? I know he can't speak, but we can assume can't we...

On the other hand, it really really sucks when you have to let go of a loved one that is dying prematurely. But when they are in pain and it is hopeless, then it seems selfish to hold on.

Ramm, it looks like you started a one sided debate... maybe someone will join the other team... soon.

I've been through this with my mother a couple of years ago and it is one of the most difficult decisions you will ever make although my mother had a living will. My mother was diabetic and eventually had 4 strokes. The 3rd one basically did her in. She was unable to move, eat, or talk. She was moved to a nursing home (thats another thread) and was hosptialized 4 times during this 3 month period. Her diabetes really hampered her recovery. My sister could not see what was coming. I could. She had power of attorney over her medical care. My mothers doctor and myself finally convinced my sister to place a DNR in my mothers chart. Believe me she did not want to. My mother was taken to surgery to clean out a bed sore that she had on her back. While in surgery the plastic surgeon, placed her on a ventilator which was against her wishes.

A few days later my brothers and sister and myself made the decision to take my mother off the ventilator. My sister told me that I would have to tell the doctor to do it because she could not. So I did. It took 3 hours and 5 minutes for my mother to take her last breath. During this time my sister wanted me to place our mother back on the ventilator. I told her we couldn't. With tears rollling down her face she asked me why? I said because mom wouldn't want us to. I can't begin to tell you what this was like. No words to describe it. But I know it my heart that we did the right thing.

I have my first child due in July and this is a very tragic story and it would be the hardest thing in the world to do but, i would not want him to suffer like that. He will never be able to have a life, and she is just prolonging his pain and suffering by keeping him on life support.

This is such an incredably difficult decision. Eventhough we think we know how we'll react, it's different when we actually have to do something. I truly feel sorry for the mother.

This is much like the case in Florida a year or two ago where the husband wanted to end his wife's suffering and her parents ( plus both Bush brothers, the Fla legislature and the US congress ) opposed him.

If that were my kid, I know I'd convince myself everything was fine and he was going to be OK and the hospital was trying to murder him and he really was smiling at me and all that. It's just human nature to do everything we can to protect our children even, like here, if we're harming them...

I think going so far as to call this mother evil is immature. When you have children Ramm I'm sure you will think about this and other things a lot differently. I would have said the same thing years ago before I was a pappy, but perspectives change a lot when your first born takes his/her first breath of air.

I feel sorry for the mother and child here. The child cannot express his wishes, and the mother has the huge obstacle of her emotions getting in the way.

Without knowing all the details, I think that if he is terminally ill, in pain, and will die soon regardless of treatment then IMHO removing the ventilator is the right thing to do. I don't see the need in prolonging his suffering an extra few months. Of course it is easy for me to say this without having all the feelings and emotions that this mother has. Who really knows until they are in this situation?

This is much like the case in Florida a year or two ago where the husband wanted to end his wife's suffering and her parents (plus both Bush brothers, the Fla legislature and the US congress) opposed him.

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Yes, it is slightly similar. But... Terri Schiavo was not on a venilator. They removed her feeding tube! That is a totally different argument in itself!

I've not been in this situation and I pray that I never am and that none of you ever are.

The only thing I will say is that everyone MUST think about this for their own self. They MUST let their loved ones know what their wishes are in the event that it happens to them and they MUST get a will, power of attny, and a living will.
DO NOT just let this hang around as one of those thing you keep meaning to do but just never get around to. You can do this stuff online for little or nothing.

This case is certainly different than what I'm talking about but do everything you can so that you don't end up in a situation where your loved ones have to make this decision for you when you are unable. And if you are smart you will break you neck to make sure your loved ones do the same thing. Everyone should have something in writting expressing how they want things handled given situation X. It doesn't really make for apleasant dinner conversation but better to have a sad night discussing it & know how mom or dad wants things handled rather than have an anguishing decision to make at the hospital...

Exactly. A living will tells you what your love one wants. Even though none of us wanted to do what we had to do, it was what our mother wanted after much discussion with her doctors. My family knows exactly what I want should I ever be placed in that kind of a situation. I know it will break their heart but they know my wishes.

And that helps, but seriously PUT IT IN WRITTING. Its possible to get yourself in a situation where the docs won't or can't do what family members say. If it's in writting it's a lot harder for that to happen.